Hidradenitis suppurativa (HS) may not be a household name, but it affects millions of people. Also known as acne inversa, HS usually begins as pimple-like bumps on the skin. If the chronic condition worsens, the bumps can grow deep into the skin, becoming painful, sometimes agonizingly so. They can also rupture.
As the deep bumps heal, scars can form, creating tracks under the skin known as tunnels. Eventually, those scars thicken. Because the bumps tend to form in skin folds such as the armpit or groin, the scar tissue can impede mobility in the arms and legs.
Many people with HS also suffer from depression. Recently, we noticed that one of the top searches on our site is “hidradenitis suppurativa and depression.” So, we decided to ask our community members living with HS about it. We received an outpouring of responses.
“It is very difficult to put into words what someone who does not suffer from the disease could really understand,” says Tracy. “HS impacts every aspect of my life. It impacts every single moment or movement in my life, in ways that many can’t comprehend. It is emotionally, physically, mentally, and spiritually draining.”
Tracy, 53, has suffered from HS since she was 18. “Just knowing that there is no cure and that you will have to live with it for the rest of your life is depressing. My quality of life is very limited. Who wouldn’t find that depressing?”
“Sometimes I get angry because it’s not fair that I live with so much pain,” says Catherine. “Sometimes I get anxious, like when I am dating someone new and I have to tell them my groin is full of abscesses. But mostly I just get sad that I can’t do the things I used to do; that if I somehow reach remission, I’ll always have the scars; that I’m always tired; that I might have passed this on to my kids.”
“HS makes me feel helpless,” says Shavaughn. “It makes me feel like I have no control over my body, my life, my actions. When something like sitting, moving, or lifting can rip your skin open, you can’t help but feel horrible. I also feel embarrassed and horrified that someone might see or smell my sores. And defeated. Oh boy do I feel completely defeated.”
Part of the problem, according to many respondents, is that the majority of people have not heard of HS and do not understand the severity of the condition, especially in more advanced cases.
“It’s so hard to explain what it is and how it affects you,” says Shanna. “Doctors will tell you that you aren’t clean or bathing enough when quite the opposite is true. They’ll put you on antibiotics and send you home, showing a lack of knowledge and respect.”
According to the Dermatology Times, HS is a difficult disease to diagnose. Once thought a rare condition, the medical community now believes it to be far more prevalent, affecting as many as four percent of the general population.
HS is often identified in patients who are in their late 20s and 30s, though symptoms typically present much earlier in life. Many people with HS have received various treatments for their symptoms without ever knowing the root cause. Once a proper diagnosis has been made, medical experts may recommend a multi-pronged approach that includes treatment for psychological effects like depression and anxiety.
Learning to Cope
Many people choose to consult with an expert to find the best course of treatment for them. Respondents from Health Stories Project also emphasize the importance of developing personal coping strategies.
“I sometimes feel inadequate or socially ‘handicapped’ in some way,” says Jay. “But when I was mocked for my condition, I fought back. Self-pity isn’t really my style.”
“I try to be as proactive as possible in preventing negative thoughts,” says Leah. “Self-care is so important. I try to eat healthily and do everything I can to control my HS. Sometimes something as simple as going outside or getting a manicure brightens my day. It took quite a long time but I’m glad I realized I am worthy of a good life even while dealing with HS.”
“In my personal life, I read, sing, do crafts, talk to family and friends, and focus on the beauty of nature,” says Tanya.
Many respondents emphasized how important it was to spread the word about HS and find support among peers, including sharing their experiences through opportunities they hear about from Health Stories Project.
“I have participated in the HS community as an activist and have educated doctors and nurses during appointments and hospital stays,” says Tanya.
“I feel better when I help other people,” says Catherine. “I have a Facebook group that I created with over 4,000 members. I have helped dozens of people get diagnosed by being open about my condition on social media. When I’m having a bad day and am feeling sorry for myself, I can look at all the people I’ve helped that I would’ve have been able to help if I didn’t have HS. I am proud of that.”